Hello everyone. I am very glad I found this place, I have been feeling so alone. As my subject mentions- my mom (72) has recently been diagnosed with Stage IV colon cancer, and it has spread to her liver. It's only been about a week since we found out.

My mom is (was?) the healthiest person I knew. She may be 72, but she is a fitness buff. She eats incredibly healthy and has been vegan for years. She seriously is in better shape than I am. Her symptoms started only a month ago, but they have progressed really rapidly, enough so that she ended up in the hospital last weekend. She lives out of the country and so flew back to the US to be closer to higher quality care. She's staying with me in my guest room right now and will through treatment here.

She can still go to the bathroom but not very much. She doesn't feel like eating at all and it is scary how much weight she has lost already, and she was lean to begin with. I am trying to make her smoothies packed with protein and other good stuff but it is sad to see her only be able to take a few sips.

We don't have a treatment plan yet as everything is very new. The oncologist was waiting for the biopsy from her liver, and then we all meet tomorrow afternoon.

So, from the caregiver prospective, I am feeling really overwhelmed. I can't sleep. I cry all day. I am a working mom to two very small children (2 and 4) and honestly I barely have my life together without being a caregiver. I am glad she is here and I want to give her the best care, but at the same time any time I take off from my job is unpaid and I am the breadwinner for my family, and we live paycheck to paycheck.

I guess my main question is what can I do for her? What should she be eating? How do I get her through treatment? I don't know what to expect.

My other question relates to being a good caregiver. Are there any resources that some of you might recommend? What will be needed of me once we start treatment? And how do I go about juggling being a mom of two little ones? Advice or commiseration all appreciated. Thank you.

How big is your two-year-old? My three-year-old is 35+ pounds, and when I need to be doing stuff, I will sometimes strap her on my back in a mei tai or something similar so I can get things done without having to worry about her getting in to things.

I don't like to expose littles to lots of technology, but, I made liberal use of it in caregiving for my husband. I tried to save it for times we were at the doctor or hospital or when I had to be helping my husband, but then we would let them watch shows/movies/play games.

Hi there, thanks for the reply. I am so sorry for the recent loss of your husband. It looks like you have been on a heart wrenching journey over the last few years, like so many here, and my heart goes out to you.

My (almost) 2 year old is not a huge fan of our carrier anymore, I can strap her on my back for a bit but she loses patience pretty quick. She is probably about 27 pounds. She actually turns 2 next month. The technology thing is a good idea though. I try to use it sparingly with my kids too, and then when I need it- it's a quick fix! I think some more screen time would really help if I need to be with my mom, I can put something on for them. Or if I'm needing to have a serious discussion, let her play with my phone. Thanks for the suggestions.

Tomorrow we meet with the oncologist. It's so weird, I dread it but I want it to happen. We're just in such a tough place right now with my mom feeling so terrible and not knowing what to do.

So sorry you have had to find your way to this board, but that being said, you have come to the right place! There is a wealth of information and support to be found here. I hope your moms visit with the oncologist went ok on Thursday. From my experience with my dad, we felt like we were in a whirl wind the first few weeks, but once we had a plan of attack in place and started out on that plan, we felt a lot better, even with his stage 4 diagnosis. I do not have small children, but I have a full time job and I live 3 hours away from my parents home, so I can relate to the stress of care giving. I went to all dads appointments and did a lot of reading on this board so that I was as well informed as I could be. Is there any way that your mom would be able to help you with the finances being she is staying with you? That might help take some of the stress off of you.

DD to 81 year old fatherdx 24/07/14 iv cc mets liver/lungfolifiri started 19/07/14shrinkage of all metsgrowth in the liver,started folfox/avastin 80% 13/01/16reduced to 70% due to side effects 27/01/16First scan on folfox shows shrinkage in lungs, but liver just stable6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendationsAt peace January 8, 2017

Hi Katie.So sorry that you had to find us, but so glad that you did. As Canadiandaughter said, wealth of information to be found here.

First of all, as someone who has had cancer, I can say that I would much rather have it than have to be the one trying to take care of someone with cancer. It's no easy thing. So do cut yourself some slack. It's okay to be overwhelmed and to feel scared and even angry. All of that is very normal. Not only is your mom sick, but this has happened and turned your life upside-down too. Your mom is very lucky to have you.

Deep breaths.

So now on to the more functional stuff. If you want to continue to have your mom stay with you, but know that you need to minimize your time out of work for obvious reasons, then what you can do is try to help your mom find some alternate support for things like transportation to appointments, etc. In most oncology centers, there are social service counselors available for patients and their families to discuss things like this. You need to make sure that your own situation is stable. Having it not be will only make it that much harder for you to be there for your mom, both emotionally and physically. If you know she's being taken care of and you can still work and keep your normal schedule, you will feel stronger and better able to function. The hard truth here is that this is going to be a long journey, so the better you can set things up now, the better you will feel as you go. Don't be afraid to take care of you. You have to. And letting your mom know that you are helping her to plan and to organize, but that you are still keeping it together will help her feel more stable too.

Does she need someone to go to appointments with her? Do you belong to a church or have any family friends who can fill that role? Is there a "survivor mentor" program at the oncology center that can hook your family up with people who have gone through the same thing that you can talk to and get advice from? These are the lines of thinking you can be doing so that you are helping, yet not putting the burden only on yourself. For me, it would have been much harder going to appointments with a loved one along. I felt much better being independent. Everyone is different. Don't be afraid to ask your mom what would make her feel the best. And don't be afraid to ask for help! Even if it means letting your own doctor know what you're going through and getting some anti-depressants if needed. It's better to have them and not need them, than to need them and not have them.

With regard to your mom's inability to eat, hopefully at the appointment on Friday they were able to discuss some of that. If not, another way you can help your mom is to write down everything you think she should mention at her appointments so that she can bring a list with her, or have whoever accompanies her write down the answers for her. Sometimes being overwhelmed with questions and information makes it hard to remember to talk about everything, or to remember later what the doctor said. Having someone living with her noting any issues or questions will help the doctors to treat her as well as possible.

The only other thing is exactly what you're doing, which is being on this group. It's a great first step. Get information. Regain some of the power that cancer has stolen from you both. Get the names of good doctors and treatment centers.

I know you said she came back to the states for good care. Can I ask what area you are in and where she is going? Is it a major center like Sloan Kettering (NY) or Dana Farber (MA)?

Keep us posted, and best of luck to you both. We're here for you.

Hugs and Prayers,Tracy

DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-oldStage IIIB: T3N1M0 3/31/16 Left Hemi4 to 10/2016: Xeloda MonotherapyCEA: 10/16 0.56, 1/17 0.543/6/17 CT clearNED at 1 year“If I can help somebody as I walk along, then my living shall not be in vain.”

canadiandaughter wrote:So sorry you have had to find your way to this board, but that being said, you have come to the right place! There is a wealth of information and support to be found here. I hope your moms visit with the oncologist went ok on Thursday. From my experience with my dad, we felt like we were in a whirl wind the first few weeks, but once we had a plan of attack in place and started out on that plan, we felt a lot better, even with his stage 4 diagnosis. I do not have small children, but I have a full time job and I live 3 hours away from my parents home, so I can relate to the stress of care giving. I went to all dads appointments and did a lot of reading on this board so that I was as well informed as I could be. Is there any way that your mom would be able to help you with the finances being she is staying with you? That might help take some of the stress off of you.

Thank you so much for your reply. It is so great to here from others who have experienced this before. I am sorry to hear of your dad's passing earlier this year. It sounds like you were a very supportive daughter the whole way through! I am totally feeling like everything is a whirlwind and my mom has such low energy right now. Did the treatments your dad underwent to reduce the size of the tumors help him feel better (at least in between) when they shrank a little? Obviously the goal is to not only extend my mom's life, but be able to enjoy it a little too. I'm beyond fearful that the pain and discomfort she is experiencing right now is going to be the new normal.

The oncologist said that with treatment, she could live another 3-5 years, but I'm worried about quality of life.

We do have a treatment plan now- starting with Folfox this week. She is getting a pretty low dose just to see how she does since she is so weak. I'm not sure though, but the drugs she is on could be contributing majorly to her fatigue. She's on a pain med, an appetite stimulant (which barely seems to be working) and so many different anti-nausea things I need a spreadsheet to keep track of them all.

WriterGirl1969 wrote:Hi Katie.So sorry that you had to find us, but so glad that you did. As Canadiandaughter said, wealth of information to be found here.

First of all, as someone who has had cancer, I can say that I would much rather have it than have to be the one trying to take care of someone with cancer. It's no easy thing. So do cut yourself some slack. It's okay to be overwhelmed and to feel scared and even angry. All of that is very normal. Not only is your mom sick, but this has happened and turned your life upside-down too. Your mom is very lucky to have you.

Deep breaths.

So now on to the more functional stuff. If you want to continue to have your mom stay with you, but know that you need to minimize your time out of work for obvious reasons, then what you can do is try to help your mom find some alternate support for things like transportation to appointments, etc. In most oncology centers, there are social service counselors available for patients and their families to discuss things like this. You need to make sure that your own situation is stable. Having it not be will only make it that much harder for you to be there for your mom, both emotionally and physically. If you know she's being taken care of and you can still work and keep your normal schedule, you will feel stronger and better able to function. The hard truth here is that this is going to be a long journey, so the better you can set things up now, the better you will feel as you go. Don't be afraid to take care of you. You have to. And letting your mom know that you are helping her to plan and to organize, but that you are still keeping it together will help her feel more stable too.

Does she need someone to go to appointments with her? Do you belong to a church or have any family friends who can fill that role? Is there a "survivor mentor" program at the oncology center that can hook your family up with people who have gone through the same thing that you can talk to and get advice from? These are the lines of thinking you can be doing so that you are helping, yet not putting the burden only on yourself. For me, it would have been much harder going to appointments with a loved one along. I felt much better being independent. Everyone is different. Don't be afraid to ask your mom what would make her feel the best. And don't be afraid to ask for help! Even if it means letting your own doctor know what you're going through and getting some anti-depressants if needed. It's better to have them and not need them, than to need them and not have them.

With regard to your mom's inability to eat, hopefully at the appointment on Friday they were able to discuss some of that. If not, another way you can help your mom is to write down everything you think she should mention at her appointments so that she can bring a list with her, or have whoever accompanies her write down the answers for her. Sometimes being overwhelmed with questions and information makes it hard to remember to talk about everything, or to remember later what the doctor said. Having someone living with her noting any issues or questions will help the doctors to treat her as well as possible.

The only other thing is exactly what you're doing, which is being on this group. It's a great first step. Get information. Regain some of the power that cancer has stolen from you both. Get the names of good doctors and treatment centers.

I know you said she came back to the states for good care. Can I ask what area you are in and where she is going? Is it a major center like Sloan Kettering (NY) or Dana Farber (MA)?

Keep us posted, and best of luck to you both. We're here for you.

Hugs and Prayers,Tracy

Hi Tracy, thank you so much for your reply. I really appreciate your experience coming from someone who has had cancer. I'm relieved to see in your signature that you are clear! Yay!

I do want my mom to continue to stay with me, but it's going to be really challenging. I live in a rural place on the Oregon coast so its certainly not ideal. The nearest state of the art cancer treatment center is an 80 minute drive. She would be able to get treatments here where I live, but I think she's not keen on that since the facility and doctors are so much better inland in the more urban area. As a result, I've got to take off quite a bit of time to drive her.

Another big concern of mine is having my kids around so closely as she's going through this. They are so small and so rowdy, and now our house has quickly become a place where they get scolded for doing normal kid stuff. I try not to of course, but I am stressed out and can see the pain in my mom's eyes when one of them tries to clamber up on to her lap, so I am feeling like I am saying a lot of "Don't do this, don't do that."

Thank you for noting that I have to take care of me. Of course. It seems so unimportant now but I know it is.

I looked into it this morning and phoned up the social worker at the cancer center. We are going to set up an appointment this Thursday. I'm hopeful that they might be able to help with some of the things you suggested- like transportation. Unfortunately we haven't lived where we live all that long, so we aren't imbedded in the community with a lot of support and other family members are out of state. It feels pretty isolating.

My dads only symptom of cancer was diarrhea. He did not have any other pain or weakness when this all started. Its hard to tell if his treatments helped the diarrhea, because the chemo he was on caused more. He actually did extremely well with his chemo. It was just since this past July that he started to get a lot worse. He got a bad bladder infection in November and that was the end of things for him. His death was really not caused by the cancer as his tumors had shrunk with the chemos he had taken and were not that large. He had NO liver issues. I honestly think that once he lost mobility from the bladder infection he made the choice that enough was enough, and I respect that. Everyone reacts differently to chemo, so you won't truly know until your mom starts. My dad had it full strength at the start and it didn't slow him down at all, but he was a very active man for his age. They had dad on different meds to help with nausea during chemo and for the most part, they worked very well. The one steroid would send his sugars out of this world, but he managed all right with his insulin to get them back down.

DD to 81 year old fatherdx 24/07/14 iv cc mets liver/lungfolifiri started 19/07/14shrinkage of all metsgrowth in the liver,started folfox/avastin 80% 13/01/16reduced to 70% due to side effects 27/01/16First scan on folfox shows shrinkage in lungs, but liver just stable6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendationsAt peace January 8, 2017

One is on your Mom's quality of life, which you're understandably worried about. It's impossible to say without knowing more about your Mom's situation, but if they're talking about 3-5 years for her, it's very likely her quality of life will be good for most of that. I'm guessing that they have a strategy for removing the primary tumor, surgery maybe? If so, your Mom will feel MUCH better after that. Like completely normal and healthy probably, once she's recovered from the operation. She should be able to eat and put on weight easily. And chemo is no fun, but I think for most people it's not as bad as they were fearing. There are other issues that can come up and make things hard. But for the most part, my life with stage IV was/is much higher quality than I expected. So I hope I'm not giving you false hope, but there's at least some reason to believe that your worst fears are unjustified. Fingers crossed.

And then the second, practical thought is about getting treated locally. I think it makes sense to visit the larger cancer center farther away for treatment decisions, operations, etc. But for Folfox treatment and CT scans, those are totally routine. Any hospital could do those things as well as any other. I would see about getting those routine treatments locally and the bigger treatments & guidance at the larger center. I'm sure the large center would prefer you did everything there, but I would hope they'd be accommodating of your situation. You could even just make the appointment locally, and I bet the local hospital would be happy to take care of everything. (I'm don't know how easy it is everywhere, but I have been able to switch back and forth between 2 local hospitals pretty easily.)

I'm glad that the information helped. I know that when I had my meeting with the social worker, it really surprised me how much information they had to offer that I hadn't even thought about. Like ACP mentioned just above, you can suggest to your Mom that she go to a major cancer center 1 time to meet with the doctors and get a plan of care that the local center(s) can then execute. This should give her the level of care and management of her health that she needs, but help cut the travel time down, whether it's for you or someone else. They may want to meet with her once or twice a year, but at least the majority of her treatment can happen locally and the big / long trips would be minimized. Lots of people are treated this way. I actually still keep plans handy to do this if anything more crops up that requires more treatment for me. It's not a bad way to go.

Also, even if your Mom wants you to be with her for the first few doctor visits, while she is afraid and trying to absorb what's happening, that might ease up as she gets into a "routine" with her treatment. So try not to get discouraged if that's the way it seems now. It might change as you go, and I'm sure the social folks will have some great advice, and might even be able to help your Mom gain some perspective.

So - I *COMPLETELY* can identify with you on the kids part! <:- )We had our son when we were older (I was 42), so our parents are all getting older which means that every time my mom is over I have to worry about my son climbing on her and hurting her knee, or her arm, or... something. LOL Thing is, you have to kind of let that go. There are many different opinions among those of us that are on the group here about telling kids the truth. I am one of those that firmly believes that it's important. While I didn't come right out and tell my son (who was 5 then) that I had cancer and could die, I did tell him that Mommy had some bad cells she was fighting, and that I would need his help. It didn't keep him from getting out of hand sometimes of course (no miracle drug for that - LOL), but it did at least help mitigate some of it. Just food for thought. Also, try not to punish yourself for that. Kids have to learn that there are times when families have to sacrifice for each other. And having them around might be a challenge, but maybe it will remind your Mom of life at a time when death is heavy on her mind.

I know when I first got my diagnosis, some very special people on this group gave me something really precious and that totally changed my life,and that was perspective. Sometimes you can't change what's happening, but you *can* change how you look at it. Do take care of you, and try to go easy on yourself. If you can't do anything about something, let it go. You don't have to be the one to make everything perfect, and nothing you can do will protect your Mom from some of the feelings and emotions she'll be going through. Just be there, and know that everything you do is precious.

Keep the faith. You feel isolated, but we are here for you, and are brothers and sisters in this battle with you. You are not alone.

Hugs and Prayers,Tracy

DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-oldStage IIIB: T3N1M0 3/31/16 Left Hemi4 to 10/2016: Xeloda MonotherapyCEA: 10/16 0.56, 1/17 0.543/6/17 CT clearNED at 1 year“If I can help somebody as I walk along, then my living shall not be in vain.”

Thanks to you both for your wise words and good advice! Tracy, I love what you wrote about how changing your perspective can help everything. I'm going to aim for that too. We are of course still in shock and there seems to be so much to figure out and do. I really appreciate your perspective about children, too. Mine seem to be doing okay and adjusting to the changes in our household. It's hard for my older son since him and my mom have been best buddies. She was so active until about a month ago.

I am rather scared because she seems to not be doing very well. She is in so much pain and unable to eat much. We met with a nutritionist who gave some ideas, but she just really doesn't feel like eating. Yesterday we got to 800 calories but that was a ton of effort. Most days it has been 500 or so. I have been freaking out. It's hard enough for me to make sure that my kids are eating, now I feel like I spend all my time in the kitchen stressed out.

She was also hospitalized for a few days late last week because of a partial bowel obstruction (not in the same location as her tumor). It cleared on its own, but now she is supposed to be on a liquid diet. She is not interested in smoothies, so I'm having a pretty hard time coming up with high calorie liquid things. She basically sleeps all day (but part of that is the meds I'm sure- she's on some pain medicine and an appetite stimulant). I might make a separate post about the eating thing to try and get broader feedback.

Unfortunately, I missed my appointment with the social worker because we were in the hospital. This was disappointing, but I've rescheduled for Friday when I take my mom back to the doctor.

She did start chemo last week- she had her first round of Folfox. She seemed to tolerate it pretty well, there were no side effects that seemed any different than what she is already experiencing, anyway. As far as the plan, I have no idea at this point. No one has mentioned to us if there is a plan for getting rid of the primary tumor. It seems we are in triage mode at the moment and her oncologist wanted her to start chemo right away. I don't know if they would consider surgery down the road (after the chemo slows the growth of her tumors) to improve her quality of life. I feel like my mom is getting a bit depressed, feeling like she is never going to feel better so what is the point of all this.

I did bring up with her the prospect of getting some of the treatments closer to me, but it didn't go over very well. She likes the fancy cancer center and feels comfortable there. No wonder, it is a brand new facility impeccably decorated and the infusion chairs have a 180 degree view of the snow covered Cascade Mountains looming over the lush green Willamette Valley. For now, I'm going to keep taking her over there. I'm hopeful as she settles into a routine, she'll be okay with doing some stuff in the local facility. There won't be a choice after a while, because when I'm all out of sick leave I won't be able to afford to take unpaid time off to travel over there.

It just seems so gloomy around my house. I'm glad to know I can come here for support. Thank you all for your wonderful comments! I am honored to be a part of this caring community. And, once I figure it out I'll get to work on my signature.

I'm so sorry things haven't taken a turn for the better yet. I know the cancer road can seem just hopelessly grim sometimes. But I'd really encourage you to stay hopeful. That rapid descent into illness that your mother has just gone through... I've been through that twice. Both times I had surgery and recovered to feeling basically 100%. I was 44 when I was diagnosed, so my recoveries were easier than your Mom's may be. But you should both keep in mind that it can happen.

When I've gone on liquid diets because of bowel obstructions, I've had some luck with chicken broth and olive oil. It's a little bit of a hassle since the oil floats on top of the broth (and the broth has almost no calories). But I'd basically pour some oil into the broth, drink a couple sips of broth/oil until I had swallowed all the oil, then add more oil. I found the mixture tasty and the oil has lots of calories. If olive oil isn't your Mom's thing, try something else (avocado, sesame, walnut, coconut oils would probably all be pretty tasty). Or if she prefers sweet, see if you can find some whole milk kefir. A lot of places carry this brand http://lifewaykefir.com/family/kefir/ It's basically drinkable yogurt. The whole milk version has way more calories. The problem I found with many liquid drinks is that they're for people trying to lose weight, so they'll use artificial sweeteners, skim milk, etc., to keep the calories down. That whole milk kefir was the most calorie dense thing I could find.

Also, do you think you could get your Mom to try some medical THC products (medical marijuana)? I know just the idea of that will turn some people off strongly. But if you can get your head around the idea, it could really help. I used it for a while for pain and difficulty sleeping. I only used it at bed time, but it worked like a charm for me. It should work to stimulate her appetite as well. I imagine it would be very easy to get in Washington. They sell THC vape pens now, and THC gumdrops, cookies, whatever. There's no smoke, no smell, it's easy. And you know, it will either work or it won't. If it doesn't, it won't have cost you much time or money. If it does, it might help a lot if the side effects are better than the other drugs she's taking. I don't know. Something to think about.